“If supporting more research into brain cancers means other families have more time and more hope, then my sister’s legacy lives on.” – Polly’s experience

Sisters Polly and Sue shared a lifelong bond filled with laughter and adventure. They spent their childhood in Cornwall putting on homemade puppet shows, skipping in the playground and singing their times tables. As adults, they shared long walks and family holidays, still bursting into the same uncontrollable giggles they had as children.

The sisters also stood side by side through difficult moments, including the death of their father from secondary brain cancer when they were teenagers and later, the death of their brother.

So, when Sue was diagnosed with brain cancer in 2020, it came as a huge shock for Polly. Now, the 72-year-old from Sheffield is sharing her experience following Sue's death and raising awareness of the urgent need for better ways to treat brain cancer, so future families do not have to face what she did.

Determined Sue’s experience should lead to something positive, Polly has become an advocate for brain cancer research, including EPIC-GB, a programme of pioneering brain cancer clinical trials funded by Yorkshire Cancer Research and led by researchers at the University of Sheffield and the University of Glasgow. 

In October 2020, Polly and her family travelled to Cornwall to visit Sue for a belated birthday celebration, postponed earlier in the year due to the Covid-19 pandemic.  

It was during the visit that Sue mentioned she had started to experience some unusual symptoms.

Polly said: "She told me she had kept dropping things and couldn’t quite reach where she meant to. At first, we thought it might be something simple, like a trapped nerve. Sue kept sheep on her farm, and after freeing a ram that had got stuck, she thought she might have strained her arm. But then she had an episode of uncontrollable shaking, and I suspected it might have been neurological. I urged her to go to the doctor as soon she could.” 

After seeing her GP, Sue was referred for a scan. However, due to backlogs caused by the pandemic, it was not booked until January 2021. In December, Sue’s symptoms worsened and she experienced a severe episode of shaking that spread to her jaw. Her husband called an ambulance and she was admitted to hospital for further tests, including a biopsy.

On New Year’s Eve – their wedding anniversary – two days after being admitted, Sue was diagnosed with a grade 4 glioblastoma, a fast-growing type of brain tumour. Sadly, she was told her treatment options were limited and the tumour could not be removed through surgery.  

Glioblastoma is the most common and fastest-growing type of brain cancer. Each year in Yorkshire, around 247 people are diagnosed with glioblastoma and sadly, around 181 people die.  

One of the key challenges in treating glioblastoma is the blood-brain barrier – a protective layer around the brain that prevents many cancer drugs from reaching the tumour. This has contributed to the lack of significant breakthroughs in treatment over the past two decades.  

Polly said: “The combination of lockdown restrictions and how rapidly Sue’s health declined made treatment increasingly difficult. Suddenly, my larger-than-life, strong sister had lost complete function down her left side and became dependent on a wheelchair.”

Sue’s doctors had planned for her to start a course of radiotherapy, but by the time treatment was able to start, her symptoms had progressed too far. Radiotherapy was ruled out as it was likely to cause further swelling and significantly affect her quality of life. Instead, doctors explained the only treatment they could offer was a steroid called dexamethasone to help reduce inflammation.   

Despite the news, Sue continued to work as a consultant to the new owners of her wool mill and began putting plans in place to ensure everything was taken care of before she died. She arranged for her house to be sold, applied for planning permission to convert a barn in her sheep field and sold her flock of sheep.  

Polly said: “That was Sue; always thinking ahead, always thinking about making things easier for everyone else.”

Pictured above: Sue and her son, Sam

As Sue’s health declined, she and Polly travelled by private ambulance to Norfolk so Sue could be closer to her son and daughter-in-law. She died peacefully on 5th April, with her husband, her son, her step-daughter, Polly and her partner by her side - just four days before her 70th birthday and nine days before the birth of her first grandchild. 

For Polly, the loss was deeply personal but also painfully familiar. With a background in healthcare and previous experience working at Weston Park Hospital in Sheffield, she was already aware of how little brain cancer treatment had changed over the decades.

Polly said: “I knew the statistics, but when it’s your sister, you cling onto hope she might be different. I also know someone who was diagnosed with brain cancer and received treatment when he was a little boy. He is now 43.” 

After Sue died, Polly began exploring ways to support brain cancer research in Yorkshire. This led her to Mr Ola Rominiyi, a brain surgeon at Sheffield Teaching Hospitals NHS Trust who is developing new brain cancer clinical trials funded by Yorkshire Cancer Research, close to Polly’s home in Sheffield.

Pictured above: Mr Ola Rominiyi

The £6.9 million EPIC-GB clinical trials pioneered by Mr Rominiyi and his team at the University of Sheffield, in collaboration with the University of Glasgow, aim to transform how cancer drug treatments are tested for people with recurrent glioblastoma, so they can access new and potentially life-extending treatment options.  

Delivered through dedicated centres of excellence for brain cancer research, the new trials, pioneered in Yorkshire, will be offered to people in Sheffield, Leeds and Hull, as well as Edinburgh, Manchester and Nottingham.

People with experience of glioblastoma, either personally or through a loved one, play an important role in shaping the development of the EPIC-GB trials. Polly is one of many who have contributed by reviewing materials that will be given to people with glioblastoma, providing feedback and suggesting ways to make the research as inclusive as possible. 

Survival rates for people diagnosed with glioblastoma in Yorkshire are often lower than the national average. Many people diagnosed with glioblastoma in Yorkshire also have fewer opportunities to take part in clinical trials compared to other regions in the UK.  

Clinical trials involving people with glioblastoma are urgently needed to find out if different cancer drugs are likely to get into the brain and work.  

The EPIC-GB trials would enable people to start drug treatments before surgery. Tumour tissue removed during the operation can then be studied, creating a valuable ‘window of opportunity’ to quickly understand which drugs reach the tumour and are likely to be effective.

By identifying promising treatments as early as possible, people with recurring glioblastoma can continue those treatments, or stop them if they don't get into the brain. This helps the person avoid unnecessary side effects and move to alternative and potentially more effective options more quickly.

Polly said: “Clinical trials are the only way we move forward. People often take part knowing it might not help them personally. That’s incredibly selfless – but without it, nothing ever changes.”

Alongside her involvement in research, Polly continues to volunteer in her community, reading in schools and supporting students with local regeneration projects in Sheffield. Every day, Sue remains close in her thoughts. 

To honour her sister and the next generation of her family, Polly has planted an acorn for each grandchild born, both arriving in April - the month of Sue’s birthday.

Polly said: “When I plant an acorn, I think about the future and how things can be different one day. I miss my sister every day. But if supporting more research into brain cancers means other families have more time and more hope, then Sue’s legacy lives on.”